Changed perceptions

The phone interview has been a revelation of sorts for me as I went into the call with a wholly different set of expectations and came away with hard hitting realizations.

How flawed was my perspective and how audacious of me to think there was only one form of ‘normal’ in the world!

I was pleasantly surprised by Dr. Shalini Modi’s positive outlook and personality. There were no awkward silences or bitterness. Only simple joys of raising a special child and sheer gratitude for being able to do so. For starters, I loved how she referred to her son, Arjun as a special and not a spastic child.

Shalini has stopped practising Pathology as her priority remains Arjun’s care and wellbeing. She currently works as a volunteer with The Spastic Society of Karnataka and works with children with low vision and sometimes counsels their parents.

“Working as a volunteer with special kids has opened a new world for me. Having Arjun has opened a new world for me. Spending time at The Spastic Society of Karnataka has helped me learn what it is to have a special child and to take care of them. Its an entirely different world and I really love it.”

Parenting a special child

Shalini welcomed me into her world, sharing her experiences of parenting a special child right from the beginning till date.

Arjun was a full term baby. Things went horrifyingly wrong after he was born. He turned blue in the nursery and the hospital couldn´t manage the situation well in time. Things got completely messed up. Shalini knew that things might not be okay for the baby but was hoping for the best. But, she was wrong.

Initially, Arjun started having seizures and was put on anti-epileptic medicines. His sleep schedule was completely messed up as he was awake the whole night and sleeping through out the day. There was always a delay in development when it came to Arjun, which was made even more obvious because there was always a twin to compare with. She was hoping all along that he would eventually catch up with the other twin someday but he never did.

It was around two years of age when the doctor diagnosed Arjun as having Cerebral Palsy – Spastic Quadriplegia. The diagnosis was delayed development all this while, and the news of Arjun being diagnosed with Cerebral Palsy completely shattered her world. Nonetheless, Shalini had to rise up to the occasion, learning how to handle a special child from his physiotherapy to his feeds. She went all over the country looking for better treatment from Kerala to Nagpur and to staying in Rajasthan for 1.5 years with her mother-in-law for an acupressure treatment. But nothing helped Arjun’s cause and they had to return to Bangalore.

The turning point

There were smaller kids than Arjun who would progress and eventually move out of the therapy centre. But, Arjun just remained there while the next lot of younger kids would come and he would sit in their batch. That’s when Shalini came to a full realisation of Arjun’s situation, however painful and hard it was for her to accept it initially.

Shalini confides – I told God, “Okay, so you have given me the toughest child to look after. I am up for the challenge. Let me prove my mettle to you! I will take care of Arjun without any expectations. And when you want him back, I will ensure that he will be in the same condition that you have given him to me. I will see to it that he does not deteriorate in any way. That was my promise to God.”

Today, Shalini Modi is at Zen with Arjun’s condition. If things change for the better, that is a bonus. If they don’t, she is completely fine with it too.

A typical day in Arjun’s life

A typical day in Arjun’s life would be like this – He wakes up really early around 5-5.30 am. His physiotherapist comes in around 6.00-6.30 am and works with him for an hour. After which, Arjun goes in for a bath followed by a walk and another round of physiotherapy at Indiranagar. He goes to his school and he’s back home in the evening. He goes for a walk again.

Arjun loves going out for a drive, listening to music and loves being outdoors. He loves listening to all kinds of music – Bhajans, Bollywood songs especially Arijit Singh’s songs, and also a lot of the same music that his sister loves.

Busting some myths around spastic children

Shalini Modi says that the biggest myth around spastic children is that they don’t understand anything.

“They understand a lot…it is we who fail to understand them. We are unable and misfit to understand what they actually feel but unable to express,” she says.

Shalini confirms that special children are extremely happy and super intelligent beings as opposed to popular myth.

Family support

Shalini owes a lot to her family saying-

“Arjun is the first (and only?) special child in the family. I am blessed to live in a joint family where everyone dotes on him and treats him like a king. My husband wakes up each morning and touches Arjun’s feet. And, I’m like ‘Oh God! What are you doing?’ And he replies ‘Arjun is my God’.”

“My daughter is my blessing. I always tell her that when God gave Arjun to me, he knew that I needed a lot of help and so, he sent you along. She is like his second mother. She can do everything for him when I am not around. She manages his medications, his feed, gives him company, and she totally dotes on him. She even fires me if something goes wrong with him. She is quite possessive of him. When my father-in-law comes home, he first looks for Arjun, even before looking for anyone else in the house. My mother-in-law…I think she would give away all our material possessions if only Arjun can be a normal child. My husband Anup’s brother’s family also participates in taking care of Arjun – especially my sister-in-law Seema who’s game to take care of him any time. They really dote on him.”

Redefining the norm – The ‘normal’

“Speaking of normal, what is it anyway?” I ask her. Shalini feels that the current generation children lack empathy and love. On the contrary, she finds the special kids absolutely normal and healthy in a refreshing way.

“Actually, when I see the so-called ‘normal’ kids of today, I would any day take care of a special child. Because they are so loving and innocent, which is lacking in so many of today’s children, who grow up so fast with all their gadgets, that they have no time or feeling for anybody – whether it is their family, friends or any one. They are so superficial. I spend my afternoons with the special children at school. I see different facets of them. Children who are mobile help their friends who are on a a wheelchair around the campus. These children won’t hesitate to help with the little things, like wiping their friend’s snotty noses. I don’t think the ‘normal’ kids would do half these things willingly on their own. But these special children are so cute and innocent. If I don’t go for a day, they question me why I didn’t come. I get so much love from these special children.”

Finding the silver lining in the dark clouds

I asked Dr. Shalini Modi how she turned Arjun’s weakness into his strength. She admits –

“It takes a while to get there. Before Arjun was born, my husband and I would go out frequently for dinners, movies, etc. But, after Arjun’s birth, things changed, as our outings became fewer. But I was clear about the fact that I wanted to take Arjun out with us wherever we went out. I was reluctant to go anywhere without him.”

She says that the family had no clue as to how different things were going to be for Arjun.

“My MIL would volunteer to take care of Arjun at home when we went out. But, I would prefer taking him wherever I went. I had to slowly convince them that not only would I enjoy, but Arjun has a right to enjoy life too. I wanted the world to know that I have a child… a special child and that I am very proud of him. I take Arjun wherever I can – the mall, movies or vacations to Goa, Mumbai or Dubai. I can run away with him to any place in the world.”

Of integrating special children into mainstream society

Shalini has taken Arjun everywhere from the start. “Even if I go to meet the Prime Minister, I will take him.”

She says it is important for the family to expose their special child to the outside world. It normalises things for them and others.

“It is also their world as any one else’s,” she says. Special children have every right to speak, listen and be with other people. She firmly believes that they should be out exploring the world and doing things that they like.

“It’s ‘criminal’ to keep the special child inside the house. Eventually, the parents will make life miserable for the child and themselves because the child will not know how to behave in the outside world. We have to be brave to take them out. Society will help you out. There are lots of good people in the world. My daughter would get very upset initially. You know how curious kids are. ‘Oh! Why is he not walking or talking?’ I would make her understand that the kids don’t mean any harm. If some people stare at your special child, let them stare. They are just curious. Most people don’t intend to be rude but there are some people who stare incessantly and make you feel uncomfortable. With time, you learn to deal with them too. You simply ignore them and move on with your life.”

Treatment for the spastic child

Dr. Shalini Modi stresses upon the importance of starting treatment at the earliest. She says that these children have problems ranging from motor, sensory, visual, hearing, and neurological issues. If they have epilepsy, they need to be kept under the supervision of a neurologist. Most of them will have feeding issues and need oral stimulation to feel sensation around their mouth.

“Swallowing is a very complex process. And, these children have a lot of motor difficulties. Because of that, they are not able to manage the amount of food going into their food pipe. So, a lot of food ends up in their wind pipe and they end up with chest infections and pneumonia. Positioning a child correctly while feeding is very important,” she cautions.

After being put on the ventilator three times, Shalini decided not to risk Arjun’s life every time she tried putting food in his mouth. When she took him to the US, a lot of doctors advised her not to feed him orally. That’s when she realised that Arjun doesn’t need to struggle for every morsel. Today, he doesn’t feed orally but via a gastrostomy, where a feeding tube which looks like a peg is inserted in his stomach.

She recollects: “I have been everywhere and for every treatment with Arjun in the hope of his recovery. Even to the US! Finally, I learnt that having a set routine with physiotherapy is important for a spastic child like Arjun. I had to learn how to manage a special child at home, his physiotherapy exercises, his feeds, medication, and his routine overall. Also, depending on the child’s ability, you have to teach your child.”

Shalini admits that treatment is expensive and not everybody can afford it. The government has a scheme called Niramaya, a sort of insurance scheme for differently abled children. Under this scheme, 1.5 lakh is allowed yearly for every child, towards medical expenses. A monthly pension of Rs 1800-2000 is also provided, depending upon the disability. 70-80% of special children fall under the poverty line and The Spastic Society of Karnataka is taking care of all their expenses from conveyance, providing them Akshaya Patra meals and getting sponsors to look into many of the children’s needs. She has generous words of praise for The Spastic Society of Karnataka.

“The Spastic Society is a divine place. I have not seen the kind of love and respect that they have for the special children anywhere else. I am so blessed that Arjun is going there.”

Advice to parents of special children

She says that the saddest thing for her is to see kids with deformities. When it comes to cerebral palsy, her personal observation has been that as parents grow older, they lose their enthusiasm and stamina to look after their special children. Spastic children need constant attention and physiotherapy. Else, their bodies become really stiff. Daily physiotherapy, exercise and movement is a must. And, I wish parents realize this because keeping their body as supple and flexible makes it easier for them to handle their special child. Else, the children end up with so many problems such as respiratory problems. When their joints are stiff, daily chores such as dressing and bathing becomes an ordeal. They should constantly work hard on their special child and they will be in a better shape.

Dr. Shalini Modi says that her current role as a volunteer enables her to help other parents with special children. She tries to help them see the brighter side of life and their child – “At least your child is walking or talking, or so what if he can’t hear, he can walk.”

Arjun cannot walk, talk and his vision is not good. He is cognitively impaired too so when you talk to him, he listens and understands like a 7 or 8 year old even though he is 16 now. On the brighter side, he has excellent hearing abilities and the most important thing is that he is a very happy child.

“Think that God has specially chosen you for parenting a special child. He has entrusted you with that divine responsibility. It is important to take care of them looking only at the positive aspects. It is physically and emotionally very draining to look after a special child and this is where the mother has to be extremely strong. If she is lucky, she will have a good support system in her spouse and family. But if she doesn’t, she has to continue to strive. The change will come if she continues to strive for whatever the child is capable of. By training her child, she will reach somewhere in the map of progress. And, she should never ever give up however tough things might get. Because things will get really tough. Keep looking after your special child without ceasing and good times will come. Most importantly, have fun while parenting them.”

Finally, what makes her a proud Mom

“Arjun is a very blessed child because he has so much of love. He goes to the park everyday and everyone looks forward to him and they all love him so much – Old ladies chat with him, children love him and even men as well. I know for a fact that if something goes wrong there… someone will surely help or inform me.

Aradhana, my daughter is extremely beautiful and intelligent, if I may say so. I feel God has compensated whatever he couldn’t in Arjun in the form of my daughter. Of course, I don’t tell her that, else it will get to her head. I remain her biggest critic.”

Thus ending our call on that complimentary note, I couldn’t help but admire the fact that Dr. Shalini Modi has happiness and contentment all around her radiant aura.

Image credit: Dr Shalini Modi

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